healthy minds: psychosocial interventions for school-aged children affected by hiv/aids

Psychosocial interventions for AIDS-affected children 1

This is the manuscript of a chapter published in Protecting childhood in the AIDS pandemic: Finding solutions that work Citation: Cluver, L. D., Kganaka, M., Boyes, M. E., & Park, M. (2012). Healthy minds: Psychosocial

interventions for school-aged children affected by HIV/AIDS. In J. Heymann, L. Sherr, & R. Kidman (Eds). Protecting childhood in the AIDS pandemic: Finding solutions that work (pp. 119-143). New York: Oxford University Press.

RUNNING HEAD: Psychosocial interventions for AIDS-affected children

Healthy Minds: Psychosocial Interventions for School-Aged Children Affected by

HIV/AIDS

Lucie D. Cluvera, Malega Kganakgab, Mark E. Boyesa, & Mihyung Parka

a: Department of Social Policy & Social Work, University of Oxford; b: HIV/AIDS

Directorate, South African National Department of Social Development

Corresponding Author Dr Lucie Cluver Department of Social Policy & Social Work University of Oxford Barnett House 32 Wellington Square Oxford, England OX1 2ER Ph: +44 1865 2 80370 Email: [email protected]


Children Affected by HIV/AIDS: Psychosocial Interventions for School-Aged Children

For any child the school years are essential in the transition into young adulthood.

During these years children establish friendships, form relationships, and build resilience to

cope with life’s challenges. For young children, the family and primary caregiver are often

the strongest influences; however, during the school years this rapidly and irreversibly

expands to include the influence of teachers, peers and the wider community. Importantly, for

children in families affected by HIV/AIDS these formative years often take place alongside

familial experiences of severe illness and death. The psychosocial difficulties associated with

growing up in an AIDS-affected family are only just beginning to be understood and are the

focus of the current chapter. Specifically, the chapter has three major aims: first, the

psychosocial needs of children affected by AIDS will be discussed; second, potential

mechanisms through which familial HIV/AIDS may influence children’s psychosocial

development will be described; and third, the evidence-base for psychosocial interventions

targeting AIDS-affected children will be reviewed. Throughout the chapter we will discuss

real-world examples, with a particular focus on sub-Saharan Africa, as well as identify gaps

in the research literature.

We use the ecological model of Bronfenbrenner1 as a broad conceptual framework.

This model was specifically developed to further the understanding of risk and protective

factors associated with children’s psychosocial health. Recently, Richter, Foster and Sherr2

have adapted this model for use with AIDS-affected children. The model sees children at the

centre of multiple, interacting layers of influence. Most proximal to the child are relationships

with caregivers and their everyday care-giving environment. More distal to the child are

school and community influences, followed by the wider political, policy, and cultural factors

that contribute to the contexts in which children live. The model suggests that the impact of

severe adversity (such as belonging to an AIDS-affected family) in a particular ‘sphere’ of a

child’s life can be mitigated by positive factors in another ‘sphere’. This theory has been

supported by research examining children’s resilience, or their capacity to have psychosocial

well-being despite the major life events to which they are exposed3. The chapter will

specifically focus on children who have lost a parent or carer to AIDS, children who are

caring for an AIDS-sick caregiver (‘young carers’), children who are HIV+ themselves, and

children who live on the streets due to bereavement or HIV/AIDS-related family problems. It

is important to note that many children may fall into two or more categories, or may move

between categories over time.


Psychosocial needs of school-age children affected by AIDS

Until the early 2000’s, there was almost no research into the psychosocial needs of

AIDS-affected children, and the literature on child mental health in the context of parental

illness or death did not yet address AIDS-affected families. As the number of AIDS-affected

children has risen into the million4, a new body of research has developed. The majority of

this research is clustered in sub-Saharan Africa and the USA, although new research in China

and India is currently underway5. Almost all of this research is still focused on understanding

the problems experienced by children affected by AIDS; an area in which our knowledge is

far from complete.

Children orphaned by AIDS

There is remarkably consistent evidence from both America and sub-Saharan Africa

that losing a parent to AIDS is negatively associated with children’s psychological and social

well-being. Emerging evidence from China suggests a similar pattern. Although there were

early fears that orphans may be ‘potential rebels’ or a ‘delinquent generation’6, recent

findings suggests that children orphaned by AIDS are much more likely to suffer symptoms

of depression or anxiety than to have behaviour problems. In sub-Saharan Africa, multiple

studies have reported that being orphaned by AIDS is associated with high levels of

emotional distress, particularly symptoms of depression, anxiety, and poststraumatic stress.

Children orphaned by AIDS also report difficulties in socialising with their peers7. Similar

findings have been obtained in the USA, although in the USA children are more likely to also

report behaviour problems such as aggression8. Recently, a controlled study in China also

reported heightened psychological distress in children orphaned by AIDS9. However, few of

the studies cited above are able to compare the impact of being orphaned by AIDS with the

impact of being orphaned by other causes. A recent South African study compared children

orphaned by AIDS, children orphaned by other causes, and non-orphans on mental health

outcomes. Results revealed that being orphaned by AIDS was consistently associated with

more depression, PTSD and peer problems (see Figure 1) than parental death by other

causes10.


Figure 1. Proportions of children in the clinical range in South Africa

New evidence also suggests that orphaned children may be at greater risk of

becoming infected with HIV in later life. A recent review11 found four studies worldwide,

reporting higher levels of HIV-infection amongst adolescent orphaned children in

Zimbabwe12, South Africa13, and Russia14. Three more studies reported higher levels of

sexual risk behaviour in orphaned children15. Although we do not yet know the mechanisms

through which orphanhood may be influencing sexual behaviour and HIV infection, one

study does suggest that psychological distress may be contributing to risky sexual behaviour

amongst orphaned children16.

Children living with HIV+ or AIDS-sick adults

Orphanhood by HIV/AIDS is not a single acute event, rather it is a process preceded

by a parent’s chronic and debilitating illness17. In sub-Saharan Africa, health systems are

often overburdened by HIV-related illnesses. This has resulted in most terminal AIDS-

patients remaining in the home. Therefore, children in AIDS-affected families are likely to

witness a caregiver’s debilitating illnesses and death.

It has been established that HIV is often a ‘family secret’ and that this can reduce a

child’s opportunities to seek support from school or peers18. Research also shows that HIV-

0

10

20

30

40

50

60

Depression Posttraumaticstress

Peer Problems Delinquency ConductProblems

Western Norms

AIDS-Orphans

Other-Orphans

Non-Orphans


positive mothers find disclosure of their status to their children stressful and worrying. A

particular worry is whether or not school-age children will be able to keep their parents’

status confidential, and this prevents many mothers from disclosing19. The evidence on the

effects of disclosure to children is mixed, and most of it comes from the USA, which may

limit its generalisation to the developing world. The few studies conducted in sub-Saharan

Africa have focused on parents’ views of the effects of disclosure, and there is a clear need

for research exploring children’s perspectives20. The little research that has been conducted

suggests that disclosure to children is often left towards the terminal stage of the disease, as

parents are often not ready to disclose in the initial stages of the illness. In most cases non-

disclosure is linked to avoidance of stigma and protection of the children21. We do know that

children who are not told of their parent’s status often suspect that something is wrong, and

may become confused and anxious22. Similarly, some studies report more behaviour

problems and depression in children after mothers disclosing HIV+ status23. On the other

hand, disclosure to children may be helpful and essential for long-term family coping. When

disclosure does happen, some parents report that it increases family closeness24. It is

imperative that we better understand how to make parental disclosure as positive as possible

for children and parents

We know very little about the psychosocial needs of children living with HIV+ or

AIDS-sick caregivers in the developing world. In the USA, studies have found both

emotional and behavioural difficulties for children whose parents are HIV+25. In China,

children with AIDS-affected parents showed higher distress than children in healthy

families26. In the developing world, qualitative evidence certainly suggests that these children

suffer from distress, and this is supported by some initial quantitative studies27. In South

Africa, the extent of caregiver sickness was found to be a mediator of children’s mental

health problems28, and a small study found more psychological distress amongst children

whose parents had full-blown AIDS than amongst children whose parents did not29.

It is also likely that many children who live with AIDS-sick adults are acting as

‘young carers’; taking on medical care (including tasks such as washing and bathing the sick

adult), household tasks, and care for younger siblings30. Evidence from the West suggests that

‘young carers’ (of parents with other illnesses and disability) are at risk of psychosocial

problems31. However, almost no research to date examines psychological outcomes for

‘young carers’ in the contexts of AIDS or in the developing world. Bauman and colleagues32

compared 50 young carers of AIDS-sick parents in Zimbabwe to 50 young carers in the US.

Results showed high levels of depression in both groups. In qualitative studies, children


report both emotional distress as well as positive experiences and competencies associated

with responsibility and contribution to the household33. Understanding the extent to which the

psychosocial problems experienced by children orphaned by AIDS are established during the

period of parental sickness is of the utmost importance for future research.

Figure 2. Things which I do: cook for my family, looking after a child, fetching medication for a sick person – lined up in long queues from 8am-3pm, getting information about diseases, attending the HIV support group for my grandmother because she cannot walk the long distance. Young Carers Study Teen Advisory Group, 2010 www.youngcarers.org.za HIV+ Children

For school-aged children, being HIV+ brings specific psychosocial needs and risks;

however, again these are not yet well understood. This section will only focus on children

who have been infected perinatally (i.e. by an HIV+ parent at birth) as psychosocial outcomes

may be different for children who are infected via abuse, injection drug use, infected blood,

and consensual or forced sexual contact. This is a newly recognised group of children. Before

the introduction of paediatric anti-retroviral medication (ART), few perinatally-infected

children survived infancy34. Recent estimates for Africa suggest that mortality amongst

HIV+ perinatally-infected children is 36% by age 1, 62% by age 5, and 83% by age 1535. A

2010 review finds that this low rate of survival is due to variable access to child anti-

retrovirals, delayed diagnosis, and poorly-resourced health systems36. However, as more

children are surviving beyond early childhood, it is important to consider their specific

psychosocial needs during the school-aged years.


The very limited evidence suggests that having the HIV virus may cause

developmental, motor and emotional delays for children37. However, a recent review found

almost no studies which looked at HIV+ children over the age of two, or at psychosocial

effects of children’s HIV-infection38. Studies of young children found that HIV+ children

scored lower on the personality-social domain of the Denver scale39 and had less secure

attachment to their mothers40. A recent qualitative study in South Africa of HIV+ children

found psychosocial challenges including dealing with loss of biological parents, coming to

terms with their HIV-status, external stigma and discrimination, and disclosure difficulties41.

For all studies of HIV+ children, it is difficult to distinguish effects of HIV-infection with the

social, economic and family impacts of the illness.

In the USA, paediatric ART provision since the mid-1990s has resulted in a cohort of

HIV+ children who are now progressing through adolescence42. Research with this group

suggests they experience emotional challenges in adjusting to a chronic, highly-stigmatised

and parentally-acquired disease43. These children are also at greater risk of psychiatric

hospital admissions for depression and behaviour problems (with an incidence rate of 6.17

cases per 1000 person years, as opposed to 1.70 cases per 1000 person years in the general

population)44. In particular, disclosure to children of their HIV-status remains a major issue.

Most children who have been infected at birth are not told of their own status until they are

thought to be old enough to understand (and often to keep the family secret). Disclosure to

the child also often means disclosure of the parent’s HIV-status, and the causes of infection.

Studies in the USA suggest that this can be a stage of great disruption for families, although

children feel strongly that disclosure is important, and many have already guessed by the time

they are told45. The school-age years are also those in which adolescents develop

relationships and often have their first sexual experiences. HIV+ children report concerns

about relationships and safe sex46, and fear that disclosure to sexual partners could lead to

social stigmatisation or rejection47. Research also suggests that this can be a time of rejection

or inconsistent use of ART medication, due to unpleasant side-effects such as developing of

embarrassing fat deposits, and adolescent ‘acting out’48. Lack of medication adherence can

have severe individual and public health outcomes of opportunistic infections and viral

resistance.

Rollout of anti-retroviral treatment to children in the developing world has been far

slower than in the developed countries. But the next five years will see increasing numbers of

perinatally-infected children on long-term ART surviving through adolescence. The

experiences of these children will certainly be in a different context to that of the USA, but it


is essential that the developing world (particularly sub-Saharan Africa) does not ignore the

possibility of similar challenges in the future.

Children living on the streets

The stress of familial HIV/AIDS can contribute to children living on or working on

the streets. The word ‘street-child’ is often used for two groups of children; those who live

with their families, but spend time on the street (often in order to earn money) and those who

sleep on the streets (but may have occasional or regular contact with families). Although

evidence is scattered and on a small scale, research does suggest that a disproportionate

number of children orphaned by AIDS are living as street-children49. There is very little

empirical research on the effects of living on the streets in the developing world, but

qualitative work and a small number of quantitative studies suggest major daily risks of

violence, drugs, transactional sex and abuse50.

Potential mechanisms through which familial HIV/AIDS may influence psychosocial

development

What is it about living in an AIDS-affected family that makes the lives of these

children more difficult than even other orphans? Research is beginning to elucidate potential

mechanisms through which familial HIV/AIDS may influence psychosocial outcomes. These

are briefly summarised below. Understanding the mechanisms through which familial

HIV/AIDS impacts upon child well-being will have important implications for the

development of effective interventions.

Caregiver sickness: HIV diagnosis and illness in parents is often associated with

depression and reduced social support51. Although we could find no studies exploring the

direct effects of HIV on parenting, there is strong evidence from other groups that children

are negatively affected by parental depression and reduced social support52. In one South

African study, the extent of caregiver illness positively predicted the level of psychological

problems for children53 and in Uganda, having a chronically ill adult in the household was

strongly associated with child psychosocial distress54.

Extreme poverty: Many studies in the developing world have shown that AIDS-

sickness has major financial impacts on households. These include loss of income from the

sick person and carer, medical costs and funeral expenses55. In South Africa and in Ethiopia,


mental health problems for children orphaned by AIDS were shown to be mediated by poor

nutrition, school exclusion for financial reasons and lack of access to social grants56, although

in Uganda hunger was not found to be a key mechanism57. We know less about the effects of

poverty on children whose parents are alive but unwell, or the effects of poverty on HIV+

children. There is some qualitative evidence suggesting that extreme poverty may result in

children engaging in transactional sex in order to support their families or pay school fees58.

AIDS-related stigma: Stigma is one of the strongest mechanisms accounting for

mental health problems such as depression and post-traumatic stress in children orphaned by

AIDS59. Qualitative evidence suggests that AIDS-related stigma is also a cause of great

distress for children whose parents are visibly AIDS-sick, with people gossiping about them

or calling their parents promiscuous or prostitutes60. Families of HIV+ people may also be

stigmatised due to inaccurate fears of infection through touching or sharing food with a

person from an AIDS-affected household61. Bullying is also an important mechanism

accounting for psychological distress, and seems to be directed both at children with AIDS-

sick parents, and children orphaned by AIDS62.

Social Support and family support: Research suggests that social support from

family, friends, and school staff can mitigate the effects of trauma amongst children orphaned

by AIDS63. Attitudes of fostering families towards orphaned children and ill-treatment in

their homes were also predictive of child psychosocial adjustment64. Importantly, a recent

review and study of caregivers of children orphaned by AIDS (mostly grandmothers) found

high levels of mental and physical health problems, suggesting that foster families may need

increased support themselves65.

Cumulative factors: The Bronfenbrenner model, and other theories of child well-

being, use a cumulative risk approach66. This means that a child may be able to cope with one

stressor, but that multiple stressors can interact to increase risk of psychosocial problems.

This is supported by evidence from a large (n = 1025) South African study, where poverty

and AIDS-related stigma interacted to increase the likelihood of child psychological disorder

(defined as scoring above western clinical cut-offs on widely used measures of depression,

anxiety or PTSD) from 19% to 83%, and bullying increased likelihood of disorder for

children orphaned by AIDS more than for others67.


Intervention for AIDS-affected children

Over the past 20 years, there has been a particular focus on developing and funding

intervention programmes for AIDS-affected children. Many of these programmes focus on

children’s psychosocial wellbeing; however, there is an almost total lack of rigorous

evaluation of these intervention programmes. A 2009 Cochrane systematic review of

interventions for improving the psychosocial well-being of children affected by HIV and

AIDS found no studies for inclusion. The authors concluded that current practice is based on

anecdotal knowledge, descriptive studies and situational analyses and that such studies do not

provide a strong evidence base for the effectiveness of these interventions68. Additionally,

there is a lack of longitudinal data that would allow stronger inferences regarding causal

relationships between potential risk and protective factors and child outcomes.

Understanding the mechanisms through which familial HIV/AIDS impacts upon children’s

wellbeing is vital for both intervention programme and social policy design.

Debates in intervention design

An important and hotly debated issue regarding interventions for AIDS-affected

children is that of ‘targeting’. Many NGO and government-led programmes are targeted

specifically at orphaned children (or children orphaned by AIDS). With regard to

psychosocial health this presents two important questions. Firstly, is there sufficient evidence

to show that AIDS-affected children have different psychosocial needs to those of other

children living in poverty? The evidence presented earlier in this chapter suggests that

children orphaned by AIDS and HIV-positive children are suffering from greater

psychosocial problems than other children. We do not yet have enough research to know

whether this is also true for children with AIDS-sick parents, but qualitative studies suggest

that this may be the case. Secondly, are targeted interventions feasible in the context of

stigma? There have been strong objections to this approach. These objections have

highlighted the differing definitions of ‘orphan’ in different communities69 and children’s

reports of stigma associated with receiving HIV-targeted or orphan-targeted relief70. This has

led to a drive for programmes which instead focus on improving outcomes for all

‘vulnerable’ children. With very limited resources in the developing world, it is difficult to

know how we can reconcile the need to help this specific group of children, with the need to

avoid stigma which may come with targeted interventions.


Another important debate in programming for AIDS-affected children is whether or

not psychosocial problems in the developing world should be addressed using traditional

models of psychosocial interventions. The Western therapeutic model of approaching child

mental health is resource intensive and often requires skilled professionals to conduct

intervention programmes. Policy-makers, and increasingly the research community, are

accepting that interventions are not sustainable in developing countries unless they are

scaleable and feasible in resource poor communities, able to be based within existing

structures (such as NGOs), and make use of existing capacity71. There are no simple answers

to these issues and they are currently being debated by researchers and policy-makers. The

following section discusses some widely-used interventions in terms of their evidence-base

and feasibility in resource poor communities.

Interventions where evidence suggests effectiveness

School-based peer group support: King and colleagues review72 found no studies

which tested the effectiveness of interventions for children orphaned by AIDS or AIDS-

affected children under the age of 18. Since this was published, our literature searches have

identified one published study; a cluster randomised controlled trial (n=326) of a school-

based peer group support programme in Uganda73. This programme was for children

orphaned by AIDS and it included 16 group sessions of psychosocial exercises, as well as

monthly physical health assessments and treatment (e.g. antimicrobial medication) or referral

to a paediatrician. The group sessions were facilitated by trained teachers, who were

supervised by a psychologist and the researcher. At ten week follow-up, children receiving

the programme showed reduced levels of depression, anger and anxiety. This programme

certainly shows promise, although its scaleability may be limited by the human resources

required (i.e. an experienced counsellor as supervisor) and the cost of medical care and

treatment.

Mentoring: Another potentially valuable new study involved a mentoring programme

for heads of youth-headed households in Rwanda74. The quasi-experimental study included

593 heads of households, of which 441 received regular visits from trained mentors. After 18

months of mentoring, youth reported greater perceptions of adult support, and less feeling of

marginalisation. Whilst feelings of grief in the comparison group rose, grief in the mentored

group stayed stable. There was also a slight decrease in depressive symptoms in the mentored


group. Although most of the youth in this study were over school-age, these generally

positive findings suggest that this intervention could also be helpful for younger groups75.

Solution-focused stories: Many interventions focus on therapeutic storytelling.

Importantly storytelling has a high level of cultural acceptability in sub-Saharan Africa, and

this kind of intervention can be done by lay people. In particular, hero books (which use

story-telling and drawing to encourage children to develop problem-solving skills) and

memory work (where parents/carers develop a ‘life history’ and discuss post-bereavement

plans with their families) have gained increasing popularity76. There are no published studies

of the effectiveness of hero books in relation to AIDS-affected children; however, the

Regional Psychosocial Support Initiative (REPSSI) has recently conducted a controlled trial

of hero books in schools with 285 children in South Africa77. This found that the intervention

group showed improved educational outcomes, and reported less worries, although there

were no differences on children’s reports of resolution of self-identified major problems in

their lives. It would be very valuable to use standardised tools to test these interventions.

Popular interventions which lack sufficient evidence

Residential camps: A study (not yet published but with a report available online78) in

Zimbabwe compared 1258 orphaned and vulnerable youth aged 14-20 years, who received

either community psychosocial support (formal and informal services that address

psychosocial wellbeing either directly, e.g. counselling, or indirectly, e.g. school and

nutritional support programs), attended the Salvation Army Masiye Camp (a residential,

faith-based program for vulnerable children), or no intervention. Unfortunately, no pre-

intervention scores were collected, the groups were not randomised, and no standardised

measures of mental health were used, so these findings are difficult to interpret79.

Broad-based psychosocial support programmes: Many programmes use a

combination of material support and ‘psychosocial support’. This is often loosely defined,

and can include organised therapeutic or non-therapeutic groups, HIV-prevention education,

individual counselling and mentoring or home visits80. Unfortunately, there is almost no

evidence to allow us to know whether these programmes are making an impact on children’s

mental health or social networks. A study in Zimbabwe used UNICEF guidelines to develop

a teacher-led psychosocial support programme (including counselling, a buddy system,

provision of school uniforms and supplies, and scripture lessons). Teachers reported better

classroom behaviour. Unfortunately the study was small, without a control group, and did not


use child-report or mental health measures, so we do not know whether this has positive

impacts on children’s psychological wellbeing81.

School-based activity groups and school strengthening: In South Africa, a cluster

randomised controlled trial is currently evaluating the impact of two linked interventions by

Soul City. SoulBuddyz clubs are groups, facilitated by teachers, which meet weekly and

follow curricula based on developing skills such as safety, increasing children’s self-esteem

and encouraging preventative behaviours for HIV and future violence. ‘Schools as Nodes of

Care and Support’ aims to enable schools to identify and support vulnerable children.

Findings will be available in 2011-2012 (University of Witwatersrand and University of

Oxford).

Similarly, the Caring Schools Project aims to support South African schools in

offering sustainable physical, social, and emotional care to orphans and vulnerable children.

Youth facilitators are placed in the school to identify orphans and vulnerable children and

provide support for these children. In a recent evaluation of the programmes school

principals and youth facilitators in 25 schools were interviewed. Overall, they reported

improved school attendance and lower rates of drop out82. However, rigorous evaluation of

the project, using pre- and post intervention measures as well as control schools, is required

before firm conclusions regarding its effectiveness can be made.

Community-based psychosocial support programmes: The National Association of

Child Care Workers (NACCW) Isibindi programme is a community-based child and youth

care service in South Africa. Community members are recruited to be trained as Community

Child and Youth Care Workers (CYCW) to work holistically and developmentally in the ‘life

space’ of children and ensure children's rights are met. Through home visits, CYCWs provide

a caring and reliable adult presence for children. Caregivers are assisted with accessing social

security grants, basic child care, advice and counselling. An external evaluation showed some

positive impact on the targeted children and families83. Unfortunately as the evaluation was

not designed to provide evidence of children's wellbeing outcomes, it is not possible to make

a firm conclusion about the Isibindi model's effectiveness. However as the evaluation

suggested some positive potential for delivering effective support services to affected

children and families, it will be worthwhile to undertake a more rigorous evaluation to

determine the model's effect on chidlren's psychosocial wellbeing.

Additionally, USAID is currently conducting a series of evaluations of their

community-based programmes, which differ by location but include elements such as


community volunteer home-visits, community-based social workers, health centres and

schools84. However, as yet no results regarding mental health outcomes have been published

Interventions which address proven mechanisms of psychosocial problems

We are clearly far behind where we need to be in terms of evidence-based

interventions for AIDS-affected children. However, we do have useful knowledge of some of

the potential mechanisms which are leading to psychosocial problems for AIDS-affected

children, and some of the preventable risk factors associated with psychosocial distress. If we

can find evidence-based interventions targeting these mechanisms and risk factors, even if

they have not yet been tested with AIDS-affected children, it could help to guide the

development of effective interventions. Targeting these mechanisms may also force us to

think ‘outside the box’ of our established psychosocial interventions and theories.

Providing ARVs to parents: We know that both parental death from AIDS and

parental AIDS-sickness) are directly linked to children’s psychosocial wellbeing. The

provision of anti-retroviral medication (ARV) to parents or carers can prevent HIV-infection

from progressing to AIDS and death. Therefore, providing ARVs to HIV-infected parents can

be viewed as a primary preventative psychosocial intervention for children. ARV use can also

reduce visible signs of AIDS in parents, and evidence suggests that this could reduce

community-level stigma for their families85. No known studies have tested the psychological

impact of parental anti-retroviral treatment on children, but an ongoing study in South Africa

will have findings on this by 201186. Importantly, in the developing world only 42% of

people eligible for ARVs currently receive medication87. Interventions focusing on

increasing this proportion are likely to result in benefits to the children of these adults.

Prevention of parent-to-child transmission and provision of paediatric ART:

Research suggests that HIV-infection can lead to cognitive and neurological problems for

children. In addition, the emotional impacts of diagnosis, and the social impacts of being

HIV+ put children at risk of psychosocial distress. A major preventative measure of these

outcomes would be to stop transmission of HIV to children in the perinatal period. A short

course of highly-active anti-retroviral therapy (HAART) to both mother and child can reduce

(PMTCT) transmission rates from 35% in sub-Saharan Africa to below 2%88. In 2008,

PMTCT access in low and middle-income countries was 32%89. It is important that this is

combined with either sole breastfeeding or sole formula-feeding in order to reduce likelihood

of infection in infancy90. For those children who are HIV+, early and sustained anti-retroviral


treatment may have positive impacts on motor development, although findings on cognitive

development are less clear91.

Reducing AIDS-related stigma and bullying: To the best of our knowledge there is

no research that has specifically tested interventions to reduce stigma for the families of

HIV+ people. However, there have been reviews of programmes to reduce stigma associated

with HIV more generally. Findings suggest that there may be positive results of legal

protection for HIV+ individuals, availability and accessibility of anti-retroviral medication92,

and sensitization to and contact with HIV+ people93. Stigma seems to be closely connected to

lack of accurate HIV-knowledge94, which suggests that public health measures to increase

understanding of how HIV is, and just as importantly is not, transmitted may be helpful.

However, recent longitudinal evidence from South Africa has found stigma to be higher

amongst those who know someone who has died of AIDS. It also found that increased

personal contact with an HIV+ person did not reduce levels of stigma95. An ongoing study in

South Africa has found positive effects of a US-designed programme called CHAMP, which

aims to strengthen family relationships, enhances problem-solving and youth peer negotiation

skills. This led to reductions in HIV-stigmatising attitudes amongst both adolescents and

caregivers96. It is clear that much more research is needed in order to understand how we can

best combat AIDS-related stigma.

Anti-bullying: There have been a number of interventions which have been evaluated

for effectiveness in reducing bullying. Most of these have been in schools, and almost all

have been in the developed world. A recent systematic review97 examined curriculum-based

interventions, ‘whole school’ interventions, social skills groups, mentoring and social worker

support. Only four of the 10 curriculum-based studies were associated with decreases in

bullying. Of the ‘whole-school’ approach, seven out of ten studies decreased bullying. Three

of the four social skills interventions showed no reductions in bullying. Both mentoring and

increased numbers of school social workers showed decreases in bullying. A year later, a

meta-analysis of all developed world school-based anti-bullying programmes concluded that

most did not have meaningful effects on bullying reduction98. In sub-Saharan Africa, one

small evaluation study suggests no impact of a school-based anti-bullying intervention, but

numbers of participants were too small (n=54 in three comparison groups) for meaningful

conclusions99.

The evidence from the developed world does suggest that whole-school approaches,

mentoring and increased numbers of social workers have potential to reduce bullying. Whole-

school approaches involve some combination of school wide rules, teacher training,


classroom curriculum, conflict resolution training, and individual counselling. Transferring

these concepts to the developing world requires adaptation to different school structures and

cultures, developing low-cost approaches, and allowing for human resource shortages

(especially in sub-Saharan Africa). It is also important to incorporate the issues of HIV and

AIDS into anti-bullying programmes.

Increasing social support and caregiver/child connectedness: Evidence suggests that

improving social support and caregiver-child connectedness has the potential to buffer the

impact of belonging to an AIDS-affected family. It is important to remember that both of

these factors work in a two-way dynamic: children who are more resilient and personable are

more able to gain support and affection than children who are depressed, anxious,

traumatised or have behaviour problems100. There is evidence from both the developed and

developing world, that parenting programmes encourage positive parenting and improve

parent-child relationships101. In Zimbabwe, qualitative research with teenagers suggested that

disclosure and discussion of parental HIV-status was seen as helpful for family closeness102.

It may be especially important to encourage connectedness in foster families for

AIDS-affected children. Although the vast majority of children remain in the kin network,

there is evidence of reduced sense of responsibility for children when biological links are not

direct103. For children who are HIV+ it is especially important that carers have the skills and

motivation to ensure treatment adherence. We were only able to find one evaluation of such

an intervention. In South Africa, grandmothers were trained in HIV/AIDS knowledge,

intergenerational communication, basic nursing skills, accessing social services and grants,

and relaxation. Participants reported greater knowledge and competence, but actual care was

not tested, and no control group was included, so this only remains indicative of a potentially

useful intervention104.

We could find no quantitative evidence to date of higher levels of child abuse

amongst AIDS-affected children. However, some researchers do report heightened risks of

abuse in families with extreme stressors, poverty or fostered children105. Anecdotal and

qualitative evidence also suggests that abuse may be more prevalent for AIDS-affected

children. The field of child abuse prevention is extensive, but a recent systematic ‘review of

reviews’ found that home visiting, parent training and child sexual abuse prevention appear to

be effective in reducing child maltreatment106. However, the authors noted that only 0.6% of

the evidence came from the developing world, and that more research was needed there. It is

also important to ensure that there is adequate capacity for child protection services, in order

to investigate and address cases of abuse. This is often made especially challenging in the


developing world by staff shortages, lack of resources such as vehicles for social workers,

and long distances in rural areas107.

Reducing poverty: A number of interventions aim to improve economic well-being

in AIDS-affected homes. These include micro-finance schemes, provision of food parcels,

‘sponsoring’ of children, and education support. One study of economic empowerment and a

savings scheme in Uganda found some positive impacts on child mental health108. A widely

debated method of poverty reduction is the social welfare grant system. In South Africa,

sustained state efforts to increase grant uptake for families with children has resulted in

increases of orphaned children receiving grants109.

Home-and Community-Based Care: We do not yet understand fully the mechanisms

by which having an AIDS-sick adult in the home can lead to children’s psychosocial distress.

But qualitative evidence suggests that children’s care-giving responsibilities can mean that

they are not able to attend school, do homework or to see friends110. New data from South

Africa reports that children are preoccupied with worry about their sick parents: ‘There are

times I can’t hear clearly because I think about her, how she is doing, whether she is eating

her tablets’ (Boy, 12 years)111. One potential intervention (to date not yet studied in children)

is the provision of Home and Community-Based Care. Home-Based Care involves trained lay

workers, who visit homes to provide nursing assistance and psychosocial support for AIDS-

affected families. This could reduce the burden on children of both care-giving

responsibilities, and of worrying for the safety of a sick person left alone. The ‘Case Study’

provides a description of Home-Based Care in the South African context

Street-children: To the best of our knowledge there are no interventions specifically

targeting street-children which have been empirically evaluated. However, a number of

theoretical and descriptive studies do provide guidelines for working with street-children.

These include the need to recognise the independence and capabilities of street-children112.

Anthropological studies highlight the strong social networks which street-children develop

among themselves113. Many studies stress the heterogeneity within the group of ‘street-

children’, and how it is important for interventions to distinguish between children ‘on the

street’ and ‘of the street’ (i.e. living at home but working on the street versus living and

sleeping on the streets)114. Some studies suggest that street-children are at no greater mental

health risk than other poor children, but they certainly have higher levels of exposure to

violence and sexual risk115. Suggested interventions for street-children include: preventative

measures within families to reduce children leaving for the streets, outreach work to engage

street-children, help with re-entering school , providing vocational training, and specifically


do not include reunification of children to families without addressing the circumstances

which made them leave116.

Case Studies: Interventions in South Africa

Within South Africa, three innovative programmes have been widely promoted – all are

potential targets for future evaluation studies.

Home and Community-Based Care: The Home and Community-Based Care (HCBC)

programme aims to support and empower families in caring for AIDS-affected children. Lay

community caregivers facilitate the early identification of orphans and vulnerable children;

make referrals to social workers for specialized services including alternative placements;

provide supervision and ongoing support to vulnerable households; assist families to discuss

and actively get involved in succession planning activities; provide psychosocial support;

assist children and their families access basic services including social grants and other

material assistance; assist children and families to access legal documents; and help children

attend school and restore normal schooling.

Drop-in Centres/Community Care Centres: Community Care centres are local centres

providing psychosocial support such as before and after-school feeding schemes, homework

clubs, laundry services, recreational facilities, training on skills for domestic work, life skills

program and holiday programmes including camps. The centre identifies children and families in need

of care and link such families to appropriate services such as access to grants, referrals to legal

services and vital registration documents, writing of wills, health care services. Referrals to social

workers for alternative care placement in places of safety, foster care and adoption.

Child care forums: Child Care Forums (CCFs) are locally-based organised groups who are committed

to advocating for the needs of children within their community. Community mobilisation can include

facilitating activities to reduce stigma, community income-generating projects, community-based day

care facilities, after-school care and holiday programmes to provide relief for caregivers. These forums

are established in the HIV and AIDS and STI Strategic Plan for South Africa, 2007-2011 (Government

of South Africa, 2007). A recent review was commissioned of CCFs, finding 400 Community Care

Forums in South Africa, but a total number of child beneficiaries reached of less than 200,000

(Mathambo, ongoing http://www.hsrc.ac.za/Research_Project-915.phtml).


Recommended actions and interventions

To date, there is an almost total lack of rigorously-tested interventions for AIDS-

affected children. This means that recommendations for action must be cautious. It also

clearly highlights the need for a rapid expansion in high-quality research specifically focusing

interventions for this group of children. Qualitative work suggests that it is important to be

aware of the potential for stigmatising AIDS-affected children through targeted programmes.

However, universal access to support programmes may be impossible to achieve in resource-

poor settings.

One preventative approach to psychosocial distress amongst AIDS-affected children

is by provision of ARVs; thereby preventing the progression of carers from HIV-infection to

AIDS, preventing the early death of carers, protecting children from mother-to-child-

transmission, and maintaining physical health for HIV+ children. Studies do suggest that

peer-group support, mentoring, and solution-focused stories may be helpful in reducing

psychosocial distress and ongoing studies are currently examining school-based peer groups,

family-centred training, and community-based strategies. In addition, there is good

epidemiological evidence to suggest the value of interventions targeting specific mechanisms

of psychosocial problems in AIDS-affected children. These could include programmes which

aim to reduce AIDS-related stigma at a community level, to reduce bullying at a school level,

and to improve nutrition and reduce extreme poverty for AIDS-affected households.

Increasing child-caregiver connectedness, and Home and Community Based Care for

families are also potentially protective interventions.

All of these potential interventions unquestionably need further research. We need to

understand whether they do impact upon children’s psychosocial wellbeing, whether these

impacts last over time, and whether or not these interventions are feasible and sustainable in

the developing world. However, it is also important to remember that research (especially

high quality research such as randomised controlled trials) is time-consuming, expensive and

requires specific skills. It is likely to be years before we have a strong enough body of

research to guide truly evidence-based practice. In the meantime, the number of AIDS-

affected children is rising by millions, raising a dilemma. Do we wait until we know ‘what

works’ for AIDS-affected children before we act and ignore children who are clearly

experiencing great psychosocial distress? Or do we continue to scale up programmes and

interventions for which we do not have enough evidence to determine whether they help or


harm children? There are no clear or easy answers to these questions, but we propose the

following recommendations.

Firstly, a concerted and immediate effort is needed to develop a body of evidence

testing the effectiveness of psychosocial interventions for AIDS-affected children. This will

require the collaboration of governments, NGOs, researchers and funding bodies. It will need

co-ordination to ensure that the interventions tested are acceptable and sustainable, and that

they are feasible to reproduce if they are proved effective. It will also need a willingness to be

open about interventions which do not work. These are not easy demands. To date, NGOs are

under great pressure to prove ‘success’ of programmes; and reporting lack of effectiveness is

seen as failure by funding bodies rather than as an important step in developing our

understanding of what will work. Researchers are unlikely to write up negative or ineffective

results, and journals are unlikely to publish them. Such a programme of research would need

coordination; and a good model for this may be the Joint Learning Initiative on Children and

HIV/AIDS 117.

Secondly, the need to continue providing interventions whilst this evidence-base is

being developed should be recognised. However, it is essential that these interventions should

use the most up to date evidence in order to maximise their potential effectiveness. Many

groups and individuals working with AIDS-affected children are motivated by love,

protectiveness and a sense of duty. These are important, and should not be undervalued. But

it is also important to channel these essential motivating factors into promoting interventions

with a strong evidence base. It is also essential that funding bodies, who hold much of the

power in determining programmes of intervention in the developing world, commit to

supporting programmes which are shown to be beneficial.

The outlook is good. We are, for the first time, in a strong position to develop the

essential body of evidence needed to evaluate psychosocial interventions for AIDS-affected

children. We have research outlining the needs of children orphaned by AIDS and we have

ongoing research identifying the needs of children with AIDS-sick caregivers. Although

research addressing the psychosocial needs of HIV-positive children in the developing world

is still required, we have evidence from the developed world to guide us in this endeavour.

We also have an expanding body of research identifying potential mechanisms through which

belonging to an AIDS-affected family may impact on children’s psychosocial well-being. By

using the evidence which we have already, and making a concerted and combined effort to

develop new evidence, we can promote resilience and positive outcomes for AIDS-affected

children.


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Endnotes

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115 Panter-Brick, "Street Children, Human Rights, and Public Health: A Critique and Future Directions." 116 Ward, "Monitoring the Well-Being of Street Children from a Rights Perspective ". 117 www.jlica.org

healthy minds: psychosocial interventions for school-aged children affected by hiv/aids

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